Yesterday we celebrated! Radiation was FINISHED!! That was a whole lot easier on Brenda than the first time she had radiation in Houston! This time the treatments only lasted 5 days, 25 minutes each time, the head mask wasn't as uncomfortable, and the side effects...so far...haven't been bad. She's just a little more tired than usual. The doctor said that the effects of the "Cyber Knife" are more gradual and would keep occurring over the next few weeks. Lets kill the beast!
We have an appointment to learn about Phase 2...chemo...next Tuesday. They called this morning to confirm all that. They are also doing genetic sequencing and those test results are not back yet. I just can't tell you how thankful we are for good doctors and the ability to treat this God awful disease.
So I have to tell you about this strange thing that happened yesterday. After radiation, we went to the grocery store to get things for dinner and Brenda was at the meat counter talking to the guy about Albertson's sea food. They got to talking about her cancer and the guy chimes in that the area is small...about the size of a pea and after about 3 to 6 rounds of chemo all will be OK. What the heck! She didn't mention anything to him about the size...just the location. He said that he was very intuitive about those types of things. So I guess if you want a health check...just go see the guy with long hair at the meat counter at Albertson's at Power and McDowell! He didn't mention anything about any health problems with me so I think I'm good to go! You know...as I always say...God gives you gifts in strange packages.
And yes, we did celebrate last night with a wonderful lobster tail dinner. Then we watched the Patriot/Raven football game and thanked God for giving us another day together.
Hi Everyone...although it's past...Happy Thanksgiving to you all. Hope you had a wonderfully delicious day with friends and/or family. Brenda and Becky cooked a marvelous turkey dinner while I went out to get Mom for a nice day away from the routine of her assisted living facility. Ryder (Becky's son) was here from Dallas and Toni joined us after I bullied her into making her mother's famous cream cheese-jello recipe! YUMMY! Now I'm sure everyone is trying to get ready for Christmas. Time is sure flying by.
The Friday after Thanksgiving, Brenda and I (of course along with the dogs) went back up to Pinetop to winterize the lodge. It was so peaceful up there and a great way to relax a little after the big turkey dinner day. We had the pellet stove going in the morning and at night. It was so cozy. The days were cold and getting colder and a winter storm was on the way. Sure wish we could have stayed to watch it snow, but we had to leave Sunday as we needed to get home for appointments on Monday. We actually hit the storm in Heber and experienced a near white out by Forest Lakes. Sure glad we didn't leave any later. Brenda got her garden all ready for winter and I got all our outdoor furniture in the garage along with our side by side vehicle and the trailer. The garage was full just waiting for spring to arrive!
The Mesa house is 99.5% done from the remodel and we have cleaned it a couple times. Construction dust hides EVERYWHERE, but the house looks beautiful and we're so glad it's done. The next phase will be to remodel the master bathroom.
Vicky...our dear, dear friend from Pittsburgh flew in on Saturday for her annual winter break from the hassles of being a doctor. There have been the usual shopping trips, the visit to a Phoenix brew pub, and a big steak dinner with the gang last night that had us laughing our fool heads off. That is such great medicine! Now Vic and Brenda are planning the yearly international meal. The region this year is Slovak and they'll put the spread on Friday night. It should be another yummy experience with the gang.
So we thought that Brenda's radiation would start yesterday but they moved it back a day. It's a complicated process to set up how to attack this damn thing with the Cyber Knife. We had to be at Barrows this morning at 8:00 only to find out that the doctor forgot to tell his staff that Brenda would be in earlier. Fortunately they warmed up the Cyber Knife and all proceeded with only about a 40 minute delay. Vic and I got a tour of the procedure. It's really an amazing process...now let's just pray that it vaporizes this nasty thing.
She has 4 more treatments...one each day. Each lasts about 25 minutes and that's all the radiation for now...more might come later however. Next week we see the oncologist so we'll see what else is in store for our trooper. She is one tough cookie! Thank the Lord!
Here's a pic of the Thanksgiving group and of Vic and Brenda at the pub (Helio Basin Brewing Company)...the craft beer was delicious and the food yummy. It's always fun to look at pictures.
Happy Sunday before Thanksgiving to you all...
Over the last week it's become quite apparent to us that in order to successfully navigate the maze of modern medicine, especially when dealing with a devil of an issue like cancer, one needs a strategically placed medical ADVOCATE to help get the machine rolling in the right direction. I know some of you will say..."Boy! Is that an understatement!"
Brenda tried to call Dr. Yousell's staff on Tuesday to see if the required paperwork from Houston had arrived so we could get this radiation show on the road. You can probably guess how the phone call went. How many of us have used the same strategy when you didn't have the answers that the caller wanted! Once they knew that it was Brenda that was calling and that she wanted to know if the paperwork had arrived as promised...the employee had suddenly stepped away from her desk! GROAN! We didn't fall off the turnip truck yesterday!! We gave up that day with a message to cal us.
Brenda had an appointment with Dr. Rehl, her ENT, the next day. Let me tell you...if you EVER need a fantastic ENT, this is definitely the doctor to go to. He is kind, gentle, considerate, humble, and a GREAT doctor. He has helped Brenda in so many ways. Well we told him how much trouble we were having getting ANYWHERE with Dr. Youseff and his staff and without a hiccup, he offered to personally call him and find out what was happening and to call us back. God love our advocate...Dr. Rehl.
We weren't 15 minutes from the office and Brenda's phone rang. It was good ole Dr. Rehl who had already talked with Dr. Youseff and found out that the M D Anderson paperwork had arrive that very morning and they were just waiting for the insurance approval for the treatment and they would be able to schedule things. AMAZING! Everyone needs an advocate...I'm just sayin!
By the end of the day Brenda had an appointment to have her radiation mask made on Monday (tomorrow) and had the MRI simulation scheduled for Tuesday evening. Once that was completed the actual "Cyber Knife" treatments could begin. Yea! Lets kill this damn thing.
Dr. Rehl sensed the beginning of a sinus infection so he put Brenda on some antibiotics and after a couple days of needed sleep, Brenda is finally feeling better and has more energy. She's still anemic but her endocrinologist put her on a new iron pill with a vitamin C tablet. She feels much better today so hopefully she's on the upswing. Maybe she just wants me to do all the house reorganizing! LOL!
I've spent the last 2 days working on getting the house back in order...what a job! I'm changing out all the door hardware and cleaning, cleaning, cleaning. You get one layer of construction dust gone and another one follows it!. But we LOVE the renovation. If you need a great company to do yours, check out Premier Kitchen and Bath. They have been fantastic!
Now we're getting ready for a wonderful and very thankful Thanksgiving celebration with friends and family. We send you all "thanks" for your friendship, your good thoughts, and your prayers for a successful treatment.
God bless you all...
Nurse/Project Coordinator...Dee
What a week this has been! But let's get to the important stuff right away. Brenda had her surgery on Monday. It was a very systematic biopsy of sites in her sinus cavity and up in the cribaform (SP?) bone where they found that nodule during her last surgery. They did find a pocket of cancer cells about the size of a dime in diameter and about the thickness of about 3 to 4 dimes in that bone above her sigmoid sinus and her brain. It's not in an easy place but it can be treated and that's the good news. It's not bone cancer, but the neuro-endocrine cancer she had that's in the bone...there is a difference.
Brenda stayed the night just to make sure she was OK from the procedure...she did wonderfully! On her discharge paperwork they said to get in touch with Dr. Youseff (radiation oncologist) ASAP for the radiation to start. Since we were right there where that will be happening, we stopped by the office to make that appointment. This is where things went to shit.
When we first saw Dr. Youseff he said that they would send away to MD Anderson in Houston for the files and necessary documents they would need from her last treatment. Well the office told us that they had requested it on several occasions and have received nothing and that we can't make an appointment until Dr. Youseff gets those files and reviews them. I about lost my mind! No one called us to tell us they were having problems. In true Brenda fashion...she remained calm while I was ready to take a plane to Houston and get all the records myself. So we get home and Brenda calls M D Anderson only to be told that they never received any request...Now I'm really pissed. This is the love of my life who has a time bomb growing in her head and we can't get folks to do their job and get some paperwork! REALLY? Brenda and I got so frustrated with their lack of followup that we just had to have a couple beers!
So it was about 7:30 on Wednesday when I got a call from my mothers assisted living facility that said she had fainted that morning and was unresponsive for a time but finally did wake up. They called the paramedics and she was taken to the local hospital. She is 95 so it's never a good thing when this happens. I zoomed over there to see what was up and found her sitting in her hospital bed in the ER, wide awake and very alert. I could breathe again! It appears that she became extremely dehydrated...she's on water pills to bleed off excess water...she has congestive heart failure, her blood pressure dropped and she fainted. The good news is that the care team was with her at the time to give her her morning meds and they caught her as she went down so she didn't hurt herself. They did a full workup but her kidneys took a hit because she got too dry and so she had to stay the night. I went back to her apartment and got some clothes for her release and her coloring books so she tolerated the stay watching TV and coloring.
While that was going on, Brenda actually made some headway with the paperwork problem. We got Venessa from Dr. Youseff's office to actually take over the responsibility of getting the records and apparently they should have them today. The images that he wanted could be e-mailed so I guess I don't have to fly to Houston right now. But we still can't make the appointment until the doc reads all the material which makes no sense to me. Shouldn't you make the appointment...it's never the next day...and then he can review the stuff in the time before we actually come in? Some of this stuff I just don't understand.
So our house remodel is almost done. We actually get to move in this weekend. We're meeting our designer there today to go over things and they are supposed to finish the plumbing install and the carpet install today which means we can move furniture back in. We gave away our old couch and chair so we also have to go look for some new stuff...that's always fun.
So I think that covers this weeks episode of "As Our World Turns Upside Down!!" We so appreciate your good thoughts and prayers...please keep them coming. We are also accepting BEER! LOL! Love to you all...
Nurse Dee
PS: Mom got out yesterday and is doing fine...I just have to get her a bunch of follow-up visits with her doctors.
Good morning village people...
So let me update you since my last entry. Brenda had to leave our beloved mountain home on Sunday Oct. 30th to help with some things in the valley on the 31st and to go to a hearing test and get a haircut on Tuesday. She came back up to Pinetop on Wednesday. We celebrated her return (I stayed up there with the dogs because our house isn't finished) with our favorite pizza dinner at Red Devil Pizza...yummy. We enjoyed the night watching Survivor (we're total fans) and then watched a couple more episodes of Season 3 of "The Fall" on Netflix...great series!
We were enjoying Thursday morning with our iPad's, a steaming cup of coffee, and a cozy fire in the pellet stove...it was in the low 40's and a rainy morning. It was heavenly. So we were just planning the day when Brenda's phone rang and our calm peaceful world shifted into high gear. I know you know the feeling when that happens. It was St. Joseph's Hospital calling to tell Brenda that she needed to be in the hospital for her pre-op tests on Friday because the surgery had been moved up to Monday. Are you kidding me???
So remember...we don't have our house in the valley, and the dogs need to go to Tucson to stay with our dear friends who volunteered to watch them. Plus the lodge hadn't been cleaned or winterized and it was already 11:00 am. We shifted into high gear, packed up stuff for some unknown time down in the valley and away we went. My totally awesome friend and her husband from Tucson said they would meet me in Casa Grande...about an hour south of Phoenix, to take the dogs and to save me that time driving. God love them. I'm telling you...it really takes a village and we are so appreciative to everyone for all they do to help us get through this.
We got to the valley in the late afternoon, went to our house, and I picked up the dog gear needed for the Tucson transfer, and off I went to Casa Grande. Brenda went over to our dear friends Becky and Vicki (that's where we will be staying) and proceeded to cook a fantastic dinner for them...that's just what she does for folks. She's such a good cook. I had dinner with my friends and told Caden and Penny (our Dobies) to be good guests and got back to Becky's around 9:00 pm. Can you say "POOPED!"
The next day Brenda went off to her tests at the hospital which took most of the day and I went to a funeral of a man I worked with at the police department for about 20 years...his death was unexpected and such a surprise to us all. Life is precious and should be appreciated to the max each day.
Saturday was full of errands and today we are taking my Mom, sister and brother-in-law (visiting from Michigan) to the movies ("Inferno") and dinner at the local restaurant/pub. It'll be a nice distraction before tomorrows surgery. I can't tell you exactly what's going to happen tomorrow except they are going to try and determine the margins of the cancer...hopefully take out what they can. I just don't exactly know. I'll be able to tell you more tomorrow. Please say an extra prayer or two that this is SMALL and can be successfully treated. We are so appreciative of your prayers and good thoughts.
So dear ones...more tomorrow
Enjoy the day...
Dee
Hi Viewers...we're up here in the beautiful White Mountains just enjoying the fall weather and the peace and quiet of our mountain home. We are so blessed to have been able to build this beautiful home and to be able to spend so much time up here. It's just good for the soul and we thank God every day. Fall is in full swing. The days are warm and the nights cold. Phoenix, on the other hand, is recording 100 degrees today...that's just wrong! It's the end of October for heavens sake!
So we went to see Dr. Saavatis, Brenda's Oncologist, on Tuesday. The approach is different than when we went to Houston. In Houston they got her into chemo right away, but they are going to wait with chemo until after her surgery on November 10th because they might put the radioactive seeds in the disease area. Of course all this could change when they staff her case at the "tumor board" on Tuesday. The next appointment we have with him is December 1st. We still have to get the hearing test and the weigh in my the neuro-eye doctor. Dr. Saavatis did talk about doing some gene-sequencing and that was a tact we were hoping they would take at some point. Let's kill this damn thing already!
The good news is that we got to come back up to the mountains and just feel the peace and quiet before the world ramps up again when we have to go home...that should be around Nov. 8th. Brenda has lots of tests on the 9th and then again the surgery to identify the margins of this crap is on the 10th. Our house is still in the renovation stage...they are now laying the new tile floor but they will be closer to being done by the time we have to leave Pinetop. (I HOPE!) For all of you who have renovated your homes...you know how that goes. HA!
Brenda is totally enjoying her time away from the doctors and is getting her head around the trail to be blazed. She is such an amazing woman and I am so very blessed to have her in my life. I'm going to charge the boat batteries and hope to do one last fishing trip before we close the place up for the winter.
So dear ones, that's the update I have for you today. Things are moving along and Brenda is good and loving life...that's what matters.
Love to you all.
Dee...the nurse is on vacation for now!
We left the cool temps and the falling leaves of Pinetop on Tuesday to meet the Radiation Oncologist that came highly recommended to us by Brenda's Neurosurgeon...Dr. Little. It was really hard leaving the mountains to go back into the chaos of the big city, the remodel of our house, and having to once again prepare for the fight that is to come. It was like having to go into a dark building looking for a suspect when we were cops. You didn't want to do it, were scared shitless, but it was a job you had to do. I think you get the picture.
To our amazement when we went to Dr. Youseff's office at St. Joseph's/Barrows we saw an old acquaintance. Venessa, the medical assistant for our GP (Dr. Mello) was now the medical assistant for Dr. Youseff. We have know her for years. There are no accidents in life and this was a sign that we were headed in the right direction and she would be there to help us internally.
Dr. Youseff was very nice, had Brenda explain everything that has happened since she was originally diagnosed with cancer in 2009, and then we got into the discussion of the treatment. He showed us the recent scans they had done before the craniotomy. He saw an area in the upper right sinus that he didn't know if it was the location of the cancer or scar tissue. The optic nerve is in that general area and that is also a concern with the upcoming radiation. At first it sounded like it might be in a place that couldn't be treated...which is NOT OK with us but then I asked some very pointed questions and he said that they could treat it but needed to locate where it was exactly and that it was SURVIVABLE! That question was soooo very important. We hang on to that concept with all our might. Let's all envision that outcome...hang on to that with all your might and send all that energy in that direction. There is power in our collective consciousness.
So he described 2 possible radiation protocols that they could use. One is called "Brachytherapy" There is either a temporary or permanent kind. It's where they implant radioactive seeds in the tumor/s. They would do this at the time the surgeons go in to try and identify the margins of the current outbreak. The other type is called "Cyber Knife" and is a very specific and targeted radiation beam that hits the affected area. The radiation treatment she got in Houston was called IMRT and it was just a flood of radiation to all the areas that were affected...neck, sinuses, and that nasty lesion to her brain. The cyber knife is very, very specific.
Dr. Youseff wants Brenda to see a Neuro-Ophthalmologist because of the optic nerve issue and the one he recommended isn't accepting any new patients...wonderful. So now we're on the hunt for a new one. He also has ordered all the records from MD Anderson and they will again staff this at the Barrows Tumor Board. It was staffed once already.
Once that meeting was done we were back on the road to Pinetop. We stopped at the house to get the dogs but we were otta there! We are so blessed to have a place to go to that brings us calm and the ability to think through some of this stuff. We thank God every day for this gift.
We again have to leave the mountains on Sunday. I have to take my Mom to the doctor on Monday and on Tuesday we have an appointment with Brenda's oncologist. As you can tell, things are still in the investigative stages. Those that know me know that I am not a very patient person! LOL! This is such a challenging time because I want to know and have this over with and the cancer KILLED for Brenda...we have more living to do! Brenda is such a strong person. She feels so much better now that they have the CSF leak repaired. She has her energy back and is getting stronger every day...that's important. She's focused once again and is doing tons of research about all these options that have been presented thus far. Vic has been a big help to offer advice and research as well. We have the best friends!
To get her mind off all this, Brenda and Toni went out to the casino to have some fun. Brenda came home a winner and she'll come home a winner in this fight as well.
I'll keep you posted on our Tuesday meeting and appreciate everyone's prayers and positive thoughts...please keep em coming!
Love you all from the White Mountains...
Nurse Dee
Morning Friends and Family...
Now that I've again figured out how to post on this blog, I'll give you all an update and then get the blog address out to everyone. We are breathing in the cool fall mountain air up here in Pinetop at our summer home. It's so healing and its the place we go to get back to nature and to calm our stressed out bodies and souls. It's an amazing place.
So let me get to the latest update...things are starting to fall into place...now if we could only get the damn cancer to fall OUT of Brenda's head!!! We went to see Brenda's new oncologist in downtown Phoenix at the University of Arizona Cancer Center that has partnered with Dignity Health/St. Joseph's Hospital and Barrows. His name is Dr. Saavitas and he's the head of the head and neck section of the hospital so once again my girl and her proclivity for creating rare things has awarded us the top doc! He said that the treatment would probably be the same as last time...chemo and radiation but maybe not as extensive...GOD! We can only hope! There are still lots of things they need to review and put together before the final treatment plan is in place but this is what she's facing right now. She needed blood work, a chest CT, a hearing test (the chemo can destroy part of your hearing,) an appointment with the radiation oncologist, and they are also going to do a biopsy of the area they found the cancer in to determine the margins. There's probably more but that's enough for now! We see the radiation guy (Dr. Yousef) on the 19th and she has the biopsy on Nov. 10th. This is going to be done by her ENT and Neuro-surgeon. Great guys! It will be a surgery with an overnight stay in the hospital. Please pump out those prayers and positive thoughts that this damn thing is small!
Those of you that know us know that we don't do things half-ass. So in true Brenda and Dee fashion, as all this medical stuff is going on, we are also doing a MAJOR remodel of our house in Mesa! Now don't yell...we started the planning for this months ago before we had any idea the C-Beast would rear it's ugly head once again. Brenda didn't see any reason to postpone this. It''ll probably be finished by the time treatment starts. When in Mesa we are living out of my sister and brother-in-laws vacation home. Thank you Barb and Tim. Our house will be beautiful when it's done but we can't live there right now...it's a holy mess!! Word to any that think about remodeling...get a great company and don't be there while they are working. AMEN!
So we are so very thankful that we have been able to build our dream home in the mountains and can come up here to be at peace. Thank you God, and Kevin and Josh Funk...our fabulous builders.
I'll post more as things happen and, as before, we look forward to your comments and efforts to make us laugh. It really helped the last time. Hopefully Marshall Vic and the gang will come out of retirement and Brenda and I can laugh our way out of the C-beast nightmare.
Sending love to you all...
Nurse Dee
Well, here we go again...damn it! A lot of you have followed our blog through the first battle of the bulge...sinus tumor back in 2009. And you have also leaned from us that the DAMN cancer...although small...is back. With this latest CFS repair via craniotomy...Dr. Little (Brenda's neuro-surgeon) found some suspicious tissue that he sent to pathology. They determined that her neuro-endocrine cancer had returned in about the same spot that it originally cropped up. Well CRAP!
So we are back on the hamster wheel of cancer killing once again. Brenda is so strong and so determined that this will again be a thing of the past and our life will go on once again. That's what we pray...dear Lord.
It's been a few years since I did the blog and so I'm trying to start it up once again. It was a great way to update everyone and get your feedback. So bear with me as I figure out the new format.
Hang in there peeps...
